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Crohn's in a foreign country

Hello everyone!
Long time lurker, first time poster.

I've been living and working in Japan for the past 10 years. About three years ago I started passing blood along with my BMs, not the mixed kind, but solid BM with copious amounts of blood at the same time. I had it checked at the hospital and they said it was bleeding hemorrhoids and that I should just wait and eventually it would stop.

Fast forward 2 months, it did not stop and I began having D and abdominal pain along with the blood. I also had developed sores in my mouth and my esophagus would hurt every time I swallowed anything. I went back to the hospital and they decided to schedule a colonoscopy and a stomach camera.

I did the stomach camera 1 week later and they found what looked like an ulcer in my esophagus, but nothing wrong with my stomach. They gave me oral steroids for the sores in my mouth and some kind of kelp-based goo that I was supposed to swallow before meals to protect my esophagus.

Another week after that, I had the colonoscopy. Here in Japan, they make you drink 2 liters of a laxative over the course of 2 hours in the morning before the colonoscopy. I was only able to down about 1-1/2 liters before I threw up the last 500 ml. They took pity on me and let me have the operation anyway. You also don't get any anesthetic, so I was able to watch the entire procedure. They found lesions in my colon, took a tissue sample for a biopsy, and told me to come back in 2 weeks for the results.

Two weeks later, I walk into the doctor's office and he tells me that I have "kuron-byo" (in Japanese, it sounds like "clone disease"). Having never even heard of Crohn's before, I had no idea what he was telling me, so I just kind of nodded my head and naively asked how to cure it. It was only when he said "chronic" that I began to understand the gravity of the situation. The doctor put me on 12 Pentasa tablets a day and told me to come back in a week for a blood test.

So here I was living in a foreign country with a chronic disease that I had never even heard of. I decided to do what any American would do--get a second opinion. I looked up the top GI for Crohn's in the country and went on a 5-hour drive to get there (sometimes it's nice to live in a small country). This doctor also said it was most likely Crohn's, and referred me to a specialist at a university hospital that was only 40 minutes away from where I lived.

The pentasa did absolutely nothing for the D or the pain. The doctor then put me on the elemental diet without the feeding tube, but even that gave me severe abdominal pain (and made me want to hurl, to boot). I began going to bed earlier and earlier, since that was the only thing that seemed to give me any relief from the pain. I would feel fine in the mornings, but by 4 p.m. the pain would become unbearable. My body began to associate eating with pain, so my appetite kept getting smaller and smaller. I was losing an average of 2 pounds (1 kg) per week, and was already down 15 lbs (7 kg) from my peak of 165 lbs (66 kg).

The doctor then put me on azathioprine in addition to the Pentasa. I was concerned about the potential side effects, but by this point I was willing to try anything to get the pain to stop.
After another week, I was losing so much weight that the doctor started talking about other options such as hospitalization, TPN, and Remicade. I decided that I would rather go to a hospital with more Crohn's experience (I was this GI's first Crohn's patient) and had him write a referral for the university hospital. I went there the following Monday. and they admitted me that day. Over the next week, I underwent a bunch of tests and my weight got down to 115 lbs (52 kg) before I started receiving Remicade.

Remicade was like a miracle drug. I started feeling better almost immediately. Three days later, my D and bloody stool had completely stopped, and I was starting to gain weight again. I felt so good that I checked out early so I could recover at home. I was still taking Pentasa but I decided to stop taking the azathioprine (I figured one immunomodulator was more than enough). I went in for a blood test once every 4 weeks and received another dose of Remicade every 8 weeks.

Just when I was starting to think that maybe this disease isn't so bad, I started having D and pain again 7 weeks after my Remicade injection. The next time, the effective period shortened to 6 weeks, then 5 weeks. About a year after my first dose of Remicade, my CRP levels were back up to where they were before I started receiving it, and I was back to losing weight. The doctor did a lower GI fluoroscopy and found inflammation in my ileum.

The doctor told me that my body had probably built up a resistance to the Remicade, and that he wanted to try a re-induction (or maybe a first induction, since I never did the 0-2-6-8 week thing to begin with) and put me on azathioprine to stop my body from building up its Remicade immunity.

Well, it worked, and I am still in remission! Now I just hope that they can find a cure before the Remicade inevitably stops working again...
 
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That's scary to be in another Country and experiencing this!!!! I wonder how much people in Japan have this. I wonder, did you do a complete diet change when you went to Japan? I've heard of people (3) eating so call healthy with no junk food or family history and still having develop IBD. It feels good when in remission but a nightmare when out.
 
Japan's incidence of Crohn's is much lower than most of the western world, at 0.5-1.2 per 100,000, but it is rising (perhaps due to the westernization of the diet?).

My diet has always been fairly healthy. I detest fast food but do have a bit of a sweet tooth. About the only real difference is the amount of rice I eat...
 

David

Co-Founder
Location
Naples, Florida
Wow David, you've been on quite a ride. I think it is a testament to your inner strength that you have been able to not only deal with Crohn's but to do so in a foreign country. My hat is off to you, good sir.

I'm so pleased to hear that you're in remission. If you haven't found your way there, I'm sure the people in our Remicade forum could use your insight, wisdom, and success story on occasion if you're ever up for providing some support.

Thank you for joining and sharing your story, it's greatly appreciated :)

*hugs*
 

xJillx

Your Story Forum Monitor
Hi David and welcome! Oh jeez, just when I thought prep couldn't get any worse. And then to have to be awake for the colonoscopy! That must have been tramatic.

I am happy to hear you are doing well and in remission. I hope it continues to work for many, many years, but we will continue to pray for a cure.
 
Thanks for the encouragement, everyone!

I'd say the worst part of this disease is the uncertainty--not knowing if the pain in your gut is just a little gas or is Crohn's rearing its ugly head again.
I've always been a bit of a fitness nut, but it's so discouraging to spend a year trying to get back into shape, just to come out of remission and lose 12 months worth of muscle development in just a few months.
Sorry if I sound like I'm whining over something relatively minor! I realize that I have it quite easy compared to some.

Oh, and being awake for the colonoscopy wasn't as bad as it may seem. Then again, I was in so much pain from the Crohn's that the cramping from the colonoscopy seemed minor in comparison! Oddly enough, the sigmoidoscopy I had during my flare was a lot more painful than I remember the colonoscopy being!
 

ameslouise

Moderator
Hi David and welcome! I agree, the unpredictability is one of the worst aspects of CD.

Glad the Remi is working for you and fingers crossed that it continues to do the trick!

- Amy
 
I know this thread is old, but I was wondering how you were doing? I was thinking of studying in Japan, but obviously worry about their treatment procedures with Crohn's. I'm glad to hear that you were able to receive Remicade.

Getting back on the Imuran was definitely the best idea. I believe that the combination of Remicade and Imuran is one of the best treatments. I'm currently on Entyvio and Imuran, but not seeing any results.
 
Japan's incidence of Crohn's is much lower than most of the western world, at 0.5-1.2 per 100,000, but it is rising (perhaps due to the westernization of the diet?).

My diet has always been fairly healthy. I detest fast food but do have a bit of a sweet tooth. About the only real difference is the amount of rice I eat...
Are you drinking milk and eating beef? These are 2 staples of the western diet that is being introduced into asian countries, that, I believe, is contributing to the rise in crohns in those countries.
 
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